Managing Re-Entry Anxiety When You Have MS

Are you seriously gonna touch that with your bare hand?

Managing re-entry anxiety when you have MS

The big news chez nous this week is that The Banker and I are finally both eligible for our second Covid vaccines.

Cue the fireworks, bust open the champagne, it’s time to party. Right?

Appointments have been booked. The end is near. I can finally start having dinners with friends, hugs and high-fives, a proper manicure and a long overdue brow-wax.

Can’t wait to be high maintenance again.

When I asked about The Banker’s post-Covid bucket list, he said, “I’ll get to do groceries in person again!”

Okay, so The Banker has obviously forgotten how to live his best life. Nobody tell him that free samples are cancelled forever. But my goals are great–noble even. So, why is there a knot in my stomach? And a pang of something else. What is that, jealousy? 

Jealousy, FOMO, and re-entry anxiety

With a vaccine end-game in the calendar, it hit me that not a lot will change for me.

To be fair, not much will change for anyone, at least at first. Toronto is just starting to dip its toe into loosening restrictions. Outdoor dining only begins this Friday (June 11). Salons are still on lockdown, meaning my elusive brow wax is at least a month away.

In Canada, masks aren’t going away anytime soon. 

But even modest progress seems like a BFD after so much hunkering down. As restrictions begin to lift bit by bit, breadcrumb by breadcrumb, I won’t get to experience the relief and peace of mind of the fully vaccinated. I still have to ask myself if it’s a good idea to participate in whatever it is the government has deemed acceptable at every stage of reopening.

Same old normal

I’m not talking about all the ways MS interferes and already keeps my life at arms length from normal (whatever that is) without a global pandemic to consider. Many people with chronic illnesses and disabilities have existed in various stages of lockdown long before Covid was on the scene. MS has meant I’ve had to sit on the sidelines before; and for the most part, I’m used to it. I’ve got my routine and my workarounds. I’ve adapted to life with a disability.

Re-entry anxiety with MS medications

The post-vax blues I’m predicting are more about the fact that even after that second shot is in my arm, I can’t assume full protection against Covid. My MS is managed by an anti-CD20 agent (Ocrevus), which is a fancy way of saying there’s a good chance my immune system has only mounted a half-assed response to the vaccine.

This isn’t to diss Ocrevus or the vaccine. I’m enormously grateful for both, because MS is still very much prepared to mess up my life at every opportunity, and in terms of the vaccine, some protection is better than no protection.

To be clear: Get the vaccine.

But some protection doesn’t equal enough protection for me to throw away my mask and start hugging my nieces and nephews. As we wait for studies to be published about the efficacy of the vaccine on immunosuppressed populations, the double-vaxxed are easing into that sweet, sweet life of fewer restrictions, enjoying boozy brunches on outdoor patios and the occasional retail experience. It’s not yet clear how I get to safely rejoin society, and me and my out of control eyebrows are feeling a little left behind.  

I miss brunch so bad. Also, those nails.

Re-entry anxiety affects more than people with MS

Feelings of nervous re-entry and anxiety aren’t unique to people with MS. Plenty of people without complicated immune systems are coping with the kind of mind-fuck that comes with having lived through a mass-death event.

In the face of all this anxiety it can be tempting to keep doing what we’ve been doing, and just stay home. Covid is the enemy we know, and isolation is the best defence. I’ve felt the fear that lingers after you’ve been told something is safe that was formerly life-threatening before. I grew up with an anaphylactic nut allergy. Yup, I was that kid. In my twenties, I saw an allergist who confirmed that, actually, I’m only fatally allergic to walnuts, peanuts, and pecans. I was told to ‘have at it’ with cashews, almonds, and pistachios.  

It was nerve-wracking to eat my first nut when I’d been conditioned to associate them with certain death. For a long time, I didn’t see the point in trying to overcome that fear. And yeah, I could have lived my whole life without Nutella, but have you tried Nutella?

Even worse than a life without hazelnut crèpes, social withdrawal has serious consequences. So many with MS already live with insufficient social capital. If we don’t actively invest in our connections we could find ourselves dangerously lonely, and fast. Because, as things start to open up, many of the people in our circles will be returning to the outside world. How quickly will they forget what isolation feels like? When there is no longer the necessity to connect in creative ways, how many people will get left behind?

We were never all in the same boat, but at least it was the same storm. 

We need to see other people

Which isn’t to say I’m interested in holding anyone back. Not even a little. The Banker has been banking from home for far too long now. At some point he’ll go back to the office, and let the choir sing. Yes, there have been perks to having him around. It’s nice to wake up to freshly brewed coffee. But, he’s a loud typer, and in our one-room open-concept loft, I have to schedule my smoothie-making around his many video calls. Calls which have taught me that banking is mostly about repeating words like, ‘initiative’, ‘core competency’ and ‘circling back’. For something as traditional as finance, there’s a lot of talk of ‘thinking outside the box’. Meanwhile, I’m a loud talker, and he’s hitting mute while I’m giving interviews about incontinence. We’re both ready to put a little bit of mystery back into this marriage. 

In defence of continued caution

Maybe I’d feel safer if we applied some of what we’ve learned from this pandemic to post-Covid life. Lockdown sucks and I hope we never have to do this again (fourth wave anxiety is real), but masking and distancing virtually eradicated flu season last year, and with one third of MS relapses being traced to colds and flus, this has no doubt had implications for the MS population. I wonder how many MS relapses were avoided and subsequent disability was prevented without infection-triggered attacks.

We don’t have to just accept that we’re going to barf our brains out or hack up a lung every winter. I’m not talking about the extreme measures we had to take for Covid, but why not normalize wearing masks in crowded indoor spaces for the wellbeing of our most vulnerable. The painful answer is that, I don’t think our society actually cares enough to do this, but I for one can’t imagine bumping elbows in a theatre or on the subway without a mask. To whatever degree I can, I will be protecting myself. 

Minimizing pandemic re-entry anxiety in a way that feels safe for me

Anxiety amounts to fear of the unknown. Welcome to MS. I should be better at processing this by now. Like the Nutella crèpes of my 20s, the potential for gossip with friends and some professional grooming are strong motivators for me to figure out a re-entry plan that feels safe for me. For those of us on anti-CD20 agents like Ocrevus, Rituxan, or Kesimpta, our vaccination status is not black and white, but more of a dimmer switch into a grey area where the rules and guidelines that the government sets out require careful consideration. 

As I mentally issue vaccine passports to the country that is me, the Dominion of Ardra, granting clearance only to those deemed trustworthy, it can be hard not to think about the choices of others in terms of who cares enough to protect me and to take my concerns seriously. But the logical part of me is also the more gracious part. The vaccine has become a polarizing proposition at a time when we need compassion more than ever. Even if I disagree with how others are approaching the pandemic, I realize their decisions are not about me. We’ve all been through trauma. Everyone is doing what they think is best, and I am free to limit my interactions accordingly, without taking things personally. 

For real, there was a country called Ardra in the 17th c. (now Benin). This crown was a gift intended for its monarch. So. (Rijksmuseum, Amsterdam).

The theme for my post-vaccination summer is: tentative, calculated. I will figure out what are safe, acceptable risks and cautiously inch my way back into society. I never wanted to do the groceries anyway.

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12 thoughts on “Managing Re-Entry Anxiety When You Have MS”

  1. Hi Ardra,

    Yes you spot on about our DMT (I am on the same as you). I recently had my blood work done with my neurologist. He wanted to see if I had developed any antibodies. I am fully vaccinated. Well…I didn’t develop enough antibodies. I was fully vaccinated April 2nd. I will now have to have a booster come August. Of course one of the hottest months in the summer. I’m over it!

  2. Since I don’t take any DMT’s, I worry about my hyperactive immune system reacting to the vaccines in the worst possible way. Not recognising the vaccine, my antibodies may decide to attack their usual target – myelin. However, I am growing older by the day and want to enjoy the last years of my youth.

    1. Kimberly Penley

      I am on no DMT as well and have tried 3 with side effects worse than my MS itself!!! I am terrified to receive the vaccine! My PCP as well as rheumatologist (have been tested for Lupus twice) both tests were above normal levels but not high enough to give me the diagnosis…also have scoliosis and some severe spinal issues..so what do we do?? Have 2 daughters who are in medical field both are RN with Bachelors of Science in nursing so pretty well informed and where I live in mountains of North Carolina many MS patients have had issues with the vaccine!!!! See Neuro in August maybe some clearer answers then!!

  3. Yes, Ardra, to everything you said! I have been anxious about re-entry for months. Being on Ocrevus has been a challenging game of trying to make good decisions all along, while my Docs’ only educated advice was always “follow the CDC guidelines!” Now, I’m weighing pros and cons of going out again, wondering what kind of immunity my Covid shots afford me. My loved ones and I have blessedly escaped the diagnosis of Covid and my concerns seem small, but I wonder what “back to normal” will look like for me. All I know for sure is I will continue to buy and wear masks that coordinate with my outfits!

  4. So glad to hear I’m not the only one with some opening anxiety. First I had to keep explaining why I had to time my vaccine due to my Ocrevus infusion and that meant I couldn’t just run out to get the first jab. Then had to wait for the ON govt to decide that my DMT meant I needed a 28 day interval for a second dose (finally booked). Now looking at a future of explaining why I’m not prepared to give up my mask just yet. I hope people will remember what we’ve learned about virus transmission and being vulnerable but I’m not too sure it’s going to stick Thank you for putting so eloquently into words my feelings so I can share with others.

  5. I’ve been on Ocrevus for 3 1/2 years. I’m very grateful that it is doing its job and keeps my MS stable. However, the immunity blood test I had, one day prior to my last infusion, shows I have very little immunity even though I’m fully vaccinated. One of the more startling things is that my body hasn’t repopulated any CD20 B cells. Not 1.

  6. Thank you, Ardra, for this lovely post. I have Lupus, not MS, but your posts speak to all of us limited by disabling diseases. I too am issuing vaccine passports and mourning the loss of those friends and family who aren’t able to understand that as long as my antibody status is questionable things won’t be “back to normal” for me. As much as I’d love to rush out to lunch and a movie with them, I’ll continue to move at my own pace.

  7. I am also on Ocrevus. Had my vaccine back in April when I had just finished my six months of Ocrevus and preparing to get my next infusion of Ocrevus. After a blood test, my doctor (I think we may have the same NYC doctor)informed me that my B cells had not reawakened, thus the vaccine basically did not work on me. So I’ve had a couple of blood tests and still waiting for those B cells to wake up. Once they do, I will receive a booster shot. Doesn’t seem fair that we have to deal with pandemic medicine as well as MS medicine and try to time it so it actually works. BTW Ardra, I am also allergic to nuts, the deathly type of allergy where I can’t go anywhere without my EpiPen. Always have wondered if there’s some sort of connection to my MS.

  8. Thanks Ardra! Exactly what’s going on in my world. Thank you for explaining it so well. Now only if CDC and the like deal with the immune compromised issue instead of ignoring our plight.

  9. Hi Ardra. There is a video from Dr. Brandon Beaber of a clinical study tracking immunocompromised individuals and real world protection from Covid19. (In Israel) It’s drawing from a large pool of differently immunocompromised individuals, but it’s nice to have some kind of real data. Short of it, was a little over 70 percent effectiveness at preventing catching the virus and a little over 74 percent at protecting against symptomatic infection.
    Great blog! 🙌🏼🧡😊

  10. It’s been 10 months since my last Ocrevus infusion and my B cells are still at 0. I did not react well to Ocrevus and have quit. I want to be vaccinated but I am concerned about a bad reaction to something that might not be very helpful?

    1. I think the consensus is some protection is better than no protection. For what it’s worth, I found both doses very tolerable (Pfizer). Good luck, I know these aren’t easy decisions.

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